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£2 million project to support UK dementia carers

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Researchers at the University of East Anglia and Norfolk and Suffolk NHS Foundation Trust (NSFT) are launching a new project to improve the lives of dementia carers in the UK.

They will work with carers and healthcare workers to co-develop and test a new ‘Carecoach’ support package – backed by £2 million in funding from the National Institute for Health Research (NIHR).

The aim of the blended care initiative is to help dementia carers stay emotionally and physically well – which is crucial for both the carer and the person they support and care for.

The project is particularly important in relation to the coronavirus pandemic, which has left many people with dementia and their carers more isolated than ever.

The project is being led at UEA by Dr Jane Cross from the School of Health Sciences and Prof Chris Fox from Norwich Medical School.

Dr Cross said: “Around 700,000 family carers support 850,000 people in the UK with dementia.

“Dementia is a deteriorating condition where the person loses one ability after another. Caring for someone with dementia puts enormous strain on the family carer’s energies, resilience, physical and mental well-being and family relationships.

“The coronavirus pandemic has put an additional stress on carers, many of whom are older, vulnerable or shielding. It means they can become even more isolated and cut off from their wider support network of family, friends, health services and support groups.

Prof Fox said: “We know that family carers provide significant support for people with dementia with very limited support for them. But it’s really important that carers get the right support too.

“We want to help carers improve their quality and life, mood and sense of being able to care well.”

Previous research has shown that intervening early to support carers builds personal resilience and enhances their ability to cope.

The research team will build on work carried out in the Netherlands, where a ‘Partner in Balance’ intervention has already been shown to reduce the burden and stress of caring for a family member or friend with dementia.

Prof Fox said: “We will develop a UK version of the Partner in Balance programme combining face-to-face sessions, a web-based home programme and support from a coach.

“The Carecoach support package will include additional film clips and other materials to better reflect the UK population and care situations.

“We will work with family carers and healthcare professionals to develop and test our new blended care approach – to really make sure it works in real life,” he added.

Juniper West, research development lead, older people’s services at NSFT, said: “In 2018-19, our research team ran a project to identify top research priorities, involving 126 service users, family or friend carers and clinical staff from our dementia and older people’s mental health services.

“The top priority was around training and support for informal caregivers for people with dementia, so the Carecoach research programme addresses very important, locally expressed needs.

“I have been fortunate to work with Geoff Fenwick, a family carer originally involved in our research priorities project with his wife Susie, who will now work alongside our team in delivering the Carecoach study.”

The research initiative will be led by UEA and NSFT, in collaboration with the University of Bradford, London School of Hygiene & Tropical Medicine, the University of Nottingham, the University of Amsterdam, and Maastricht University.

The team will also work with collaborators including Dementia UK, the Alzheimer’s Society, the TIDE network of carers, former carers and health and care professionals (Together In Dementia Everyday) and INTERDEM (the European network on research into early detection and timely intervention in dementia). Software will be developed by Ilionx.

The project is hosted by the Frailty Research Group which is part of UEA Health and Social Care Partners (UEAHSCP).

Geoff and Susie Fenwick’s story

Geoff has been married to Susie for 31 years, in late 2011 they first noticed a decline in Susie’s short-term memory. In spring 2012 they sought medical advice and Susie was eventually diagnosed with early onset Alzheimer’s.

Alzheimer’s affects people in different ways, in Susie’s case she became anxious and withdrew from friends. She had taken early retirement and was at home on her own – not easy when you are having to accept and adjust to dementia. Geoff, who will be a co-researcher on the new Carecoach study, soon ran his business down and retired in 2015 so he could become Susie’s full time carer.

Geoff said: “Acceptance I feel was probably the first and hardest step to take when coming to terms with dementia, once we had achieved that we were able to take a more proactive approach in adapting our relationship and lifestyle to the demands of dementia. Focussing on what we could do, not what we could no longer do.”

One of Geoff and Susie’s many strategies was to take part in research, both clinical trials and lifestyle assessments. They started Susie’s clinical trial in London in 2013 which is still ongoing and gives them access to possible new treatments yet to become available through the NHS.

They have also found lifestyle research to be equally important as it helps health professionals understand what it is really like for both the person with dementia and their carer.

Geoff said: “We joined this in 2014 and have taken part in several different studies run locally by NSFT and UEA over the last six years – all very interesting and enjoyable for both of us – the kindness and respect we have had from the researchers has been second to none.”

However, Geoff feels Carecoach is different as its ultimate aim is to help carers establish viable techniques and strategies for coping with the challenges that dementia throws up for both themselves and the people they care for. It is not aimed at health professionals, it is aimed at an army of untrained everyday people who need help.

“As a co-researcher and existing carer my involvement in the project will bring vital first-hand experiences to help model the training programme,” he said.

“Personally, it will be a boost for my own mental health wellbeing and hopefully I will learn a few new tricks along the way, as well as being able to share ideas that have worked for us. If you want to know the road ahead ask those coming back.”

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QEF’s accessible technology wins international awards

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The new Care and Rehabilitation Centre in Surrey, developed by Queen Elizabeth’s Foundation for Disabled People (QEF), has won 2 international CEDIA awards for its innovative use of accessible technology, which was supplied by technology solutions partner Imperium Building Systems Ltd.

These awards recognise the improvement technology can make to the lives of disabled people, which is reflected at a UN event that forms part of this year’s International Day for People with Disabilities. The global UN awareness day today (December 3) highlights the challenges and discrimination disabled people face around the world, and pushes for positive change towards greater inclusion, accessibility and equality for disabled people.

This year on December 3, the UN is co-hosting an event specifically looking at ‘Reducing Inequalities through Technologies’ noting that: ‘persons with physical, sensory, cognitive/learning or invisible disabilities represent nearly 15 per cent of the world population’ 1 and that ‘for some kinds of disabilities, assistive devices/technologies are key “equalizers” that promote inclusion and full participation in all industries and dimensions of life’. 1

The event also highlights that ‘One billion persons with some form of disability can benefit from assistive technologies that can facilitate their social, economic and political engagement, including their participation in decision-making processes that affect their lives and ambitions’ 1

QEF’s Care and Rehabilitation Centre provides neuro rehabilitation for people after an acquired brain injury, stroke, incomplete spinal injury or other neurological condition and clients are supported by expert staff to relearn core skills, so they can rebuild their lives and be as independent as possible.

QEF’s vision for the new Care and Rehabilitation Centre was to use technology to give each person greater control over their personal space, no matter what a person’s impairment may be. It’s easy to take for granted being able to close the blinds when the sun is in your eyes or turn the lights off when you want to go to sleep – until you can’t do it for yourself. QEF wanted a system that empowered clients to have a greater sense of self-determination and influence over everyday activities during their rehabilitation.

Imperium developed the project with QEF, producing a cost-effective ‘smart home’ solution, using easily available technology that is adaptable to each persons’ specific requirements. Five connected smart devices have been installed in each bedroom which can be controlled in different ways; either with standard voice commands, pre-programmed accessible switches or programmable text to talk commands.

Ann, a client at QEF’s Care and Rehabilitation Centre, says: “I wasn’t sure about it at first – it was odd to sit in my room on my own and talk to something, but now I use it all the time. You can have the blinds down, lights on or off or the TV on or off. It’s another step on the journey of independence, so I don’t have to ask someone to do it for me.”

Chris Thorne, director of Imperium, says: “The technology we have installed for QEF will allow service users to have control over the lights in their room, temperature, day light via shading blinds, and audio-visual equipment. So, someone could stay in one position and manage their entire room, either with switches or voice controls. It also needed to be technology that service users could easily access after they left the service; creating independence that could continue beyond QEF’s walls.”

The international CEDIA awards recognise technical excellence and product innovation in the home technology industry. Imperium’s project with QEF was announced in November 2021 as winners in the ‘Multi Dwelling Unit Design’ category and also went on to win the overall award for ‘Life Lived Best at Home’ which reflects the project that gives the best experience for a client.

Judges for the Life Lived Better at Home award said: “This entry is outstanding for its sensitive and pragmatic response to the brief and for the way the technology meets the changing needs of the users. And all this achieved on an extraordinarily tight budget. I hope there will be many more projects like this in the future!”

Karen Deacon, QEF’s chief executive, says: “Our new Care and Rehabilitation Centre gave us an opportunity to use technology in an innovative way that would directly benefit clients as they relearn core skills. Adapting to life after an acquired brain injury is challenging for anyone and if technology can help give someone back their sense of control over everyday activities then we wanted to be able to offer that as part of our neuro rehabilitation programme.”

  1. Reducing Inequalities Through Technologies: A Perspective on Disability Inclusive Development https://www.un.org/development/desa/disabilities/wp-content/uploads/sites/15/2021/11/IDPD2021ConceptNote.pdf

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Webinar to explore the future of brain injury rehab

Join our panel of expert guests as we discuss the challenges and opportunities in improving patients’ lives

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The future of brain injury rehabilitation and how patients can be supported in new ways is to be examined by leading experts from across the sector at an event held next week. 

Brain injury rehab has made huge strides over the years, innovating and developing to better meet the needs of people living with life-changing injuries. 

Through changes in technology, developments in medicine and the advances in neurorehabilitation, brain injury patients should face an outlook which is better than ever before. 

However, the lack of resource within health services, exacerbated by the ongoing impact of COVID-19 and mounting pressures on the NHS, mean that progress and change is not being seen at the rate many would hope for.  

In 2020, the British Society of Rehabilitation Medicine (BSRM) identified the increased pressure on neurorehabilitation, highlighting the “unquantifiable additional case-load of patients with post-Covid disability presenting with a wide range of problems due to cardio-pulmonary, musculoskeletal, neurological and psychological/ psychiatric complications of the disease.”

In an upcoming webinar – What does the future of brain injury rehabilitation look like? – to be held on Wednesday next week (December 8th) and organised by NRC Medical Experts in association with NR Times, this matter will be examined to assess the scale of the challenge, the opportunities that exist, and what more can be done to better support patients. 

The panel will comprise:

The live hour-long event, from 4.30pm to 5.30pm, will include a panel debate, with questions welcomed from the audience. 

“Health and social care services have been under increasing pressure from an ageing population for decades and this has now been exacerbated by the disruption created by COVID-19,” says Edmund. 

“Brain injury rehabilitation services have always been poorly resourced in the UK, and are now under increased strain while professionals are diverted into the acute management and rehabilitation of COVID-19 patients. 

“It is essential therefore that we consider how to improve service delivery models so that people with brain injury do not fall further behind in the queue. 

“Technological innovation in its many forms offers much potential here, but realising this will be a substantial undertaking for which we are as yet ill-prepared. 

“During this webinar we will explore some of the major opportunities and problems.”

To attend the webinar, registration is required in advance. To sign up, visit here 

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Thousands supported by communication training

In its first year, the Communication Access project has engaged over 4,500 organisations and individuals

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Thousands of organisations and individuals across the UK have benefitted from an initiative to support people with communication difficulties since its launch a year ago. 

The Communication Access UK scheme, a free e-learning tool, delivers training on accessible face-to-face, telephone and online conversation and customer service, in support of the millions of people in the UK who live with some form of speech, language or communication disability. 

Organisations that complete the training will be able to display the Communication Access Symbol in their workplace, demonstrating their commitment to supporting customers and staff who experience difficulties in communication. 

More than 4,500 businesses, organisations and individuals have already taken part in the initiative, which launched last November and was developed by the Royal College of Speech and Language Therapists (RCSLT), in partnership with the Stroke Association, Headway, MND Association, Business Disability Forum, Communication Matters, The Makaton Charity, and the National Network of Parent Carer Forums.

And on the first anniversary of its launch, two organisations have achieved landmark ‘firsts’ in support of Communication Access. 

Barnsley FC has become the first football club in the UK to undertake Communication Access training and commit to supporting people with speech, language and communication barrier. Its charity arm, Reds in the Community, has also signed up to the initiative.

Northern Devon Healthcare NHS Trust (NDHT) has also become the first NHS Trust in England to gain accreditation to the standard, offering the package to its entire workforce. 

The success of the scheme to date comes as the campaign to secure better access to speech and language therapy continues, with thousands supporting a petition to the Government and 20 APPGs calling on Prime Minister Boris Johnson for action.

“Communication disability in the UK affects millions of people, so I’ve been thrilled to see so many organisations and individuals register for the free multi-award winning Communication Access training in the last year,” says Royal College of Speech and Language Therapists’ chief executive, Kamini Gadhok.

“Barnsley Football Club has just become the first football club to be CAUK accredited, while North Devon Healthcare NHS Trust is the first NHS Trust to commit to training its entire workforce to enable them to provide communication accessible services and it’s been fabulous to see organisations setting the bar for others in this way.

“Of course, we’d like to see many more businesses and people register for the training, so please visit the website and register for the training today.”

Barnsley FC’s CEO, Khaled El-Ahmad, said: “Our club has a number of touchpoints, both of digital and physical nature, and it is integral that we provide the best service possible to supporters. 

“Knowing that we are making strides to communicate in an inclusive manner is positive, as we look to improve our offering and overall experience for individuals living with disabilities at Oakwell.”

Andrea Bell, deputy chief nurse at NDHT, added: “At NDHT, we encounter a huge variety of patients with extra communication needs, from those who may have had a stroke to people with visual or hearing impairments. It’s vital that we are able to communicate with them to give them the best possible care.

“We’re extremely proud to be the first Trust in England to become part of Communication Access, and we hope other Trusts will follow our lead in facilitating the best possible communication with patients.”

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